Ray Duckler: Destigmatizing mental illness is no easy task
Debbie Dion’s ringtone – the song “Do You Want to Build a Snowman” – interrupted Thursday’s calm outside the New Hampshire State Hospital.
So did the voice on the other end.
Officials at the hospital had relayed concerns to the social worker who works with Dion’s son, 15-year-old Shay Perselay. They felt uneasy about the photos being taken. Something about public reaction. Did Dion realize the potential embarrassment that could arise from revealing her son’s condition?
The Concord resident who watched helplessly while her son, waiting for residential care, endured nine days in a room at Concord Hospital, with his mattress on a concrete floor and no windows and no rug and a locked door, felt a twinge of irony.
The medical community, in its fight against stigmatizing mental illness, had stigmatized mental illness.
“They wanted to make sure I was aware of the ramifications of going public,” said Dion, a parent aide at Child and Family Services. “They
should have come down and said to my son, ‘You are so brave.’ That’s what they do for cancer patients. They stage walks and events and people say, ‘Look how courageous they are.’ Here it’s like, ‘We’ve got to keep those crazy kids under wraps.’ ”
As you may notice from her quote, Dion is a colorful, bold woman, full of passion and energy and humor. Sixteen years ago, she agreed to adopt Shay before he was born, knowing that, because of his parents’ mental makeup, the chances were good he’d have problems.
And he does. He’s on the autism spectrum, and he suffers from depression and anxiety. He’s been at the state hospital since Memorial Day weekend, hoping doctors can find the right mix of medication to help him adapt to everyday life.
Right now, Shay is painfully shy, making eye contact with the ground more often than someone’s eyes. Meanwhile, Dion is furious, and she doesn’t care who she tells or how many feathers she ruffles.
After her son’s stay in that drab room at Concord Hospital, called Yellow Pod, she wrote a letter and emailed it to a lot of people.
The top dogs at Riverbend Community Mental Health and Concord Hospital and the Disabilities Rights Center got it. Representatives at the New Hampshire Commission for Human Rights and the Autism Society of New Hampshire and the Governor’s Commission on Disability got it. U.S. Sens. Jeanne Shaheen and Kelly Ayotte got it, as did Reps. Annie Kuster and Carol Shea-Porter.
“In our incarceration facilities, the mattress is on a bed frame and there is a small window in each cell,” Dion wrote. “Within all levels of the prisons, inmates are given a minimum of one hour outside their cell, which the children in Yellow Pod were not even allowed. My son has a neurological condition, not criminal behavior.”
The room is bare for safety reasons, and the stay there can be long because funding for treatment, here, there and everywhere, is not a priority.
Treat an autistic person or someone who’s bipolar as though they have cancer? Are you serious?
That’s where Dion comes in. She’s been fighting for a good chunk of her life, trying to bring dignity and attention to those who have slipped through the cracks.
She worked for 10 years at Granite State Independent Living. She’s a licensed therapeutic foster care provider. She’s a parental aide at Child and Family Services.
She’s caring for a 13-year-old girl who’s had a troubled past. But now the girl loves to sing and dance in shows, and is getting the best grades in her life. She’s just one of several teens who’ve lived with Dion during the search for a foster home.
“All of these children need to know someone cares about them,” Dion said. “A lot of times they are damaged children, and they come to my home and I try to repair whatever I can. I try to love them.”
Shay is her adopted son. The road that led him to Dion reveals the depth of her commitment.
She counseled a woman, an alcoholic, who had been impregnated by a rapist and had the baby. The woman later moved out of state with a man, but, while pregnant with his child, returned to New Hampshire after the child’s father began physically abusing her.
Overwhelmed, the woman asked Dion if she’d adopt the unborn child, Shay. Dion said yes.
“I should have read the fine print,” Dion said, laughing. “I knew going in that Shay would possibly have difficulty because both his mom and dad have a psychiatric past of depression. DNA is DNA. I had no idea of the extent, or where this journey would take me. I still don’t know, but I don’t love him any less, and I don’t ever view him as broken. He is a perfect Shay.”
He’s had 11 stays at the state hospital, and only recently did the diagnosis move from bipolar to autism, which has delayed the process of finding the proper medication.
“That’s why the medication didn’t work,” Dion said. “We were treating something that he didn’t have.”
Mainstream schooling, at Kimball School, for example, didn’t work. Shay’s behavior was a problem, and he became violent at times.
But while Dion acknowledges that Shay’s unpredictability pushes help away, she adds that society prefers not to see the truth, that mental illness belongs in the same category as diabetes or any other sickness.
This fuels the stigma.
“They think it’s evil more than illness,” Dion said. “It’s lack of awareness.”
Shay’s time at Yellow Pod last spring set Dion’s recent campaign in motion. As she said, “When I was sitting with Shay in Yellow Pod and we were talking about this, I said to him that sometimes it’s not important if you win the battle, it’s important that you fight the battle. Right now, I am willing to go on record to anyone who will listen to me that I do not condone what is going on in Yellow Pod. That’s all I can do. I have one voice.”
Later, at the state hospital, Dion showed Shay the letter she would later send all over the state.
“Mom, let’s do it,” Shay told her, according to Dion. “Because then I’ll know someone cares about me.”
Interviewing Shay, outside at a picnic table near a pond, was difficult. He wouldn’t shake hands, and he did his best not to smile, talk or make eye contact.
But, eventually, he had a lot to say, without using many words.
Asked if he thought his treatment at Yellow Pod was wrong, Shay said, “Of course it was wrong. I was dying in that place.”
Then, after the music from Dion’s cell phone filled the warm air, we learned that state hospital administrators, in the facility just 100 yards away, were worried.
They thought Shay might embarrass himself.
“I am getting better and being strong,” Shay said. “And they’re trying to hide it.”